Lazy Sunday morning RV'ing it in the backyard!

Birthdays have always been a really big deal in my family.  When my brother and I were kids my mom used to decorate our bedroom door with streamers and balloons so when you opened it in the morning you walked through them.  In junior high my friends would come really early in the morning and "kidnap" me for a pre- school birthday breakfast after dressing me in ridiculous attire.  In college we would do something silly for the birthday person and then go party after classes.

Since having my own family I have tried to carry on the "birthdays mean something" tradition.  If you read the blog regularly you know that we decorate the house for the birthday person after they've gone to bed.  The day of we get cupcakes, blow up balloons, get our gifts ready, and head out to the restaurant of the special person's choosing.  The girls are always soooo excited for birthdays.  Mike has never been big on celebrating his birthday since I met him.  Even before kids I would sneak out of the bedroom after he was asleep to hang a banner and balloons, and he did the same for me.  Since the girls have been old enough to understand what a birthday is their enthusiasm is contagious....Mike likes his birthday.  The girls go around all day telling people who's birthday it is.  Its just a really fun time.

Mike's first with an April 4th birthday.  Safi comes next on April 9th, Nixi on April 23rd.  My birthday is May 22, after Mother's Day and all of the previous month's excitement.  And this year, much the same as the last, was just a really terrible birthday.  Whether it be because of all of the excitement or changes leading up to my birthday or that its something about it being mom's birthday....by the time it comes its absolute chaos.

This year was no exception.  Despite Nixi's meds being decreased two days before, and those two days going pretty well, she was an all out mess.  She was crying, screaming...then mean and screaming...then back to crying and screaming, etc.  It was horrible.  It totally threw Safi off her game and made it difficult for her to enjoy the day and she was also angry at Nixi, repeatedly saying "no being mean on mama's birthday".  There were points during the day where we were all crying.  I had to text Mike and give him a head's up before he got home.  By evening I had no desire to go out to dinner because I was so tired from the up's and down's of the day so we took the girls to Del Taco and let them burn off steam in the play zone.

Every year that passes, my birthday means less and less to me.  In some ways that's sad, but in more ways its just the natural progression of things.  Days in my home can be absolutely magical or the deepest pit of hell.  You never know what you're going to get when you wake up.  You learn to take nothing for granted and to appreciate the calm when its there.  You revel in the good days, and secretly fear that this day may be the last good day for a while..for ever.  You live in the moment, because that's all you have.  You learn that a day is just a day and you're lucky if you get another one to try again.  So, while a joyous birthday celebration would be great...I have bigger fish to fry.

The rest of the week was pretty good.  Within hours of giving Nixi the lower dose of Risperidone in the morning on Monday it was apparent that it was definitely the meds causing her decompensation last week.  It was a tremendous relief to see her go back to where she was on just the .25mg in a matter of hours.  We'll stick with the slight increase for a month or so.  At that point we'll either try to increase once again or we'll just go back to the .25mg because we aren't seeing any gains at this point with the .125mg increase.  We want her on the least amount of meds possible so there's no point in giving her more if it isn't doing anything helpful.  Time will tell.  She needs to get it all built up in her system and the longer you take Risperidone, typically the better it works.

She didn't want to go to school again this week.  Saying, "I want to stay away from school."  I allowed her to stay home on Tues because of the horrible field trip fiasco the week before and taking into account her recent med change.  She said it again on Thursday.  I told her she had to go or no last day of school Pirate Party for her on the 30th.  She went.  When I picked her up the teacher told me that she had reported seeing monsters at circle time.  The teacher went on to tell me that they talked about it with all of the kids, how monsters aren't real and there aren't any monsters in the classroom, etc.  Awesome.  Thanks so much for not only negating Nixi's experience but also bringing all of her peers in to it thereby highlighting the fact that she, alone, sees these things and is different.  Don't expect her to tell you when she's hallucinating ever again, dumbass.  I get it, she was trying to do the right thing.  Trying to make Nixi and the others kids feel safe and secure in the classroom.  But dude, we've talked about this and about how to handle such things.  So, I reiterated that Mike and I would have said something to the effect of, "I don't see any monsters but that must be very scary for you.  Is there anything I can do to help you?", and gathered up my extremely anxious child and headed home.  I asked Nixi if that was the first time she has seen monsters at school..."No."  I asked her if they are quiet or loud?...."LOUD!!!  Its hard to hear teacher."  Does that make you want to go to school?...."No.  It makes me want to stay away."  And there you have it...the reason Nixi hasn't been wanting to go to school for the past week and a half.  I called her teacher and told her.  I'm hoping it got to through to her that just because Nixi doesn't appear to be hallucinating DOES NOT mean that she isn't, as her teacher has said a number of times before "She doesn't hallucinate here."  The sad part is that Nixi finally trusted her enough to tell her and, in Nixi's eyes, was totally shut down.  She used to tell the sub that was there at the beginning of the year when she was hallucinating...she trusted her.

Safi had a pretty great week.  With the end of the school year comes the end of homework!  More play time, more time outside, happy Safi.  She made her speech teacher an end of the year flower arrangement and was very proud of it.  I can tell she's a little bummed about the end of the year but she's really excited about summer school.  I think it'll really sink in a few weeks after school is out and she starts missing her friends 5 days a week.  Nonetheless, she's in great spirits and looking forward to a field trip to the local grocery store on Tuesday.  Her dad's going with her and they are both excited.  I'm very much looking forward to volunteering at the school on Safi's last day.  They've had parent volunteers in class all year but I haven't wanted to throw Safi off so I've stayed away.  At this point she's just as excited as I am and I really hope it doesn't mess up her last day.

Tomorrow is Memorial Day.  Mike set up our new above ground pool and tomorrow we'll fill it and take the girls swimming!  They're really excited and really terrified all at the same time.  We figure we'll start off slow in our 33" deep pool before heading over to Emily's in ground, real deal pool.  Should make for a really interesting extra day off for us all.  Mike and I are really excited

Sarah

Looong week.  Nixi's med increase is not going as we had hoped.  She has been extremely emotional all week and taking a very long time to recover, wakes up at 4am, is antsy and restless, her focus is gone, and today during her nap her legs were constantly moving while she slept.

We had a lot of routine changes at the end of last week before the med increase.  Changes to the routine always throw Nixi for a few days.  We know this so we stayed the course and continued to give her the additional .25 mg of Risperidone in the morning as well as the usual .25 mg at night.  Unfortunately, here we over a week after the routine changes and she's still a mess.  Its looking more and more like side effects, possibly akathisia.  Akathisia is characterized by unpleasant sensations of inner restlessness that manifests itself with an inability to sit still or remain motionless.  Its different than tardive dyskinesia in that it is not involuntary.  That is it is a voluntary movement by a person to relieve themselves of the inner restlessness.  It causes significant emotional distress, irritability, moodiness, and depression.  There is also a subjective side effect not as well research because it is purely by patient report called neuroleptic dysphoria.  Could be that.  Could be the natural waxing and waning of the illness as even with the perfect medication regimen breakthrough symptoms occur, even decompensation.  Could be that she was recovering from the routine changes and then was hit by the ultimate fiasco field trip at school on Thursday.   We just don't know.

That's one of the many horrible parts of medicating a 4 yr old with a serious medication.  While Nixi is extremely articulate and well spoken, its hard to ask her side effect questions in an age appropriate manner.  

In any event, I gave her the full .25mg tonight and will give her a half dose (.125mg) in the morning and call the psychiatrist.  All I know is that we are totally deflated.  

The two weeks after Nixi started meds was really kind of magical.  We were learning all of these new things about her.  There was a lightness in the house that hadn't been here in a long time.  As of this writing, that is gone.  Mike and I are snipping at each other because we're tired.  We're all walking on egg shells around Nixi.  Safi is loving having the loud, fast, rough Nixi until it tips over into a meltdown and everyone is left crying.  Its really miserable and really scary.  Nixi is back to being tormented but this time its different.  Yes, she still hallucinates but her thinking is relatively clear.  This doesn't seem to be coming from a place of psychosis, this is like emotional bombs being dropped on her out of nowhere.  Its not anything like the torment that caused us to begin meds.  This is different, but every bit as upsetting to everyone.  

My hope is that by taking down the meds this will improve.  If it doesn't after ample time to rule out environmental factor....that means this is not the med for her.  That means she will be harder to treat.  Remember, its a very good thing if kids respond well to their first med.  Because it is working on the psychosis, we clearly have the correct class of med but maybe not the right one.  We shall see.  

That's it for tonight.  I really don't have anything more to say.  

Sarah

Despite it all, the girls still knows how to have a good time when her mood allows.......

Beach Day at Safi's school........

Mother's Day....

Mother's Day.  When you're pregnant and you watch all of the Hallmark commercials, crying because your brain is flooded with hormones and thusly reminiscent of a big, smooshy sponge cake, you cannot wait for that first card.  That first kiss and a hug followed by a elbow pasta art masterpiece or a hand print plate.

You sit and you dream.  Its really nice and lovely to say that you dream of all of the wonderful things your child will do and experience as if these dreams you dream are really for them.  In fact, these are your dreams, your hopes, your wishes.  There's nothing wrong with that.  No one would dare shame you for closing your eyes and imagining a your beautiful child to be...well, beautiful.  No one would give it a second thought if you recounted a dream you had of your child dancing in a ballet, playing Mozart at age 5, cooking along side you in your kitchen as if he/she were a master chef.  No one begrudges the parent to be's dreams, hopes, and wishes.  This is as it should be.

However, what happens if your child is different from the norm?  Cleft palate, Down Syndrome, CP, Autism,  mental illness, the list could go on as just as in nature every flower is different so are our children.  What if the  sweet, innocent, whimsical dreams that you dreamed watching that Hallmark commercial when you were expecting are not to be?  Who is there to support you, grieve with you, and tell you nothing is wrong when your heart palpably aches?

The book shelves are filled, positively filled with books about parenting children with disabilities.  They painstakingly take you through their experience learning that their child would be "different", coming to terms with it, coping with it, and ultimately what a blessing it has been for them.  Go on message boards and read the replies that most parents get from a newly diagnosed child...the diagnosis doesn't matter much, you'll see the same theme over and over again.  "You were chosen", "Your life will be enriched beyond your belief", "I am the luckiest person on earth to have a child with X", "This is such a blessing", "You are so lucky to have a such a special child."

So, here's my problem.  Where are the books that give parents of special needs kids the permission (as if that should even need to be given) to grieve the death of the Hallmark dream?  Where's the message boards that get down and dirty into the pain, anguish, anger, resentment, and grief without all of the the fluff at the end?

The definition of grief: keen mental suffering or distress over afflictionor loss; sharp sorrow; painful regret.  My experience as a mother has been all of these.  Mental suffering and distress over the loss of the dream of the life that I and my family would have.  Sharp sorrow when I witness the daily, never ending struggles that my children endure and that Mike and I will endure for the rest of our lives.  Painful regret when I try to remember if I had the flu when I was pregnant, if I took enough folic acid, if I ate too much mercury or not enough fish for the Omega-3's.  As I write this I am acutely aware that I am using my backspace button far too much, as I fear how you will think of me. That only makes me want to type faster, and harder.

Let me take a moment to share with you my Hallmark dream.  Mike and I were going to take our children to India.  We were going to take them to Morocco so they could see where we honeymooned.  We were going to have more than two children.  We were going to strive to raise children that were happy, whatever that meant for them.  We were going to allow our children the freedom to find their own paths, supporting them along the way and relishing in their successes and the lessons learned from their near misses.  We would take the girls on trips to visit both of our families.  We would do family BBQ's and camping trips with our friends and their kids.  I was going to go back to work when they were school aged.  I was going to do a backwards longitudinal study on antisocials to try to come up with better interventions when these people are children and before they are incarcerated and a trail of victims is left in their wake.  Mike was going to retire.  After 25+ years of working in a maximum security prison, he was going to find a passion and really live.  Maybe we would have grandkids, maybe not.  I kept my favorite woven wraps and baby carriers to pass down to the girls and secretly hoped they would let me use them myself with their babies.  We were going to have a life that goes through all of the phases....raise kids, advance career, watch our kids create their own paths/families, grow old, relax and enjoy looking back on the life and lives we had created.

Dead.  Not going to happen.  Not our life.  Mike can't retire yet because he's driven to retire at the highest amount possible because then when he dies the girls (if deemed permanently disabled, we know Safi qualifies) will get his pension until they are dead.  I need to be with the girls.  At this point I'm lucky if I have the time and the energy to do our grass roots summer school, let alone resuming professional activities.  I hope to one day have things stable enough at home that I can find per diem work or advocacy work that uses my degree and knowledge while still allowing me flexibility for the girls.  The dream now consists of trying to find a way to make the income needed to buy a large parcel of land somewhere near a University so that we can build a new kind of board and care.  Think summer camp cabins strewn over a large property where people with Autism or other disabilities can live as independently as they are capable with the support of 24 hr staff.  I can provide supervised clinical hours to psychology students (that's why it needs to be near a University) which will get us fresh, excited, new professionals at a fraction of the cost of licenced people.  Mike will help build programs for residents that will partially make the facility self-sufficient (solar power, vegetable/fruit gardening, dairy cows, chickens, goats, etc) but also allow residents unable to work in a conventional job an opportunity to have purpose, pride, and interaction with the larger community through small scale farmer's market type sales.  We've been refining our plan since Safi was about 2.  It's special needs utopia....and its a dream born out of Mike and I's abject terror at what fate will befall the girls when we die.  Yep, they're 4 and 6 and we've been seriously planning for our death for more than half of Safi's life and all of Nixi's life.  While this new dream, a much more noble path than the other, will hopefully be an amazing start at a new way of treating our dependant adults in America (or Canada if we chose to head across the border, eh?).....it means a lifetime of work for us.  No retirement.  No relaxing.  No golden years.

Sound a little woe is me?  It is.  As selfish as my grief may seem it is no more self centered than those whimsical dreams we all have of everything being a Hallmark commercial.  Because those are OUR dreams, aren't they?  And that's ok.  Its normal, its human nature, there should be no shame in either.  We didn't chose this path.  We were drafted into this war, remember.  We aren't special or "chosen", we are two people who's genetics comingled to create two beautiful but seriously troubled lives.  Our kids didn't ask to be born.  They didn't ask to have us as parents.....though the spiritual side in me likes to think that these lost souls drifting in some parallel universe thought "Well, as long as they're hell bent on doing this we may as well drop by."  Here we are.  This is our life and we're going to make the most of our lives because our daughter's lives and well being depend on it.  The dream quickly replaced by reality.

We accept this and we are in it for the long haul.  But I'm pissed.  I'm depressed.  And I'm going to be, on and off, for the rest of my life.  That is fact.  For every new stage of life that my girls reach, for every success, there will likely be close to equal measures of pain and anguish.  I hope for equal because some days, some weeks, pain and anguish rule.  Their lives will NEVER be easy, and everyday ho-hum.  The energy that Mike and I put out to make their day ho-hum and/or easy is exponential.  I do not point this out for applause or kudos, neither of those will give me more sleep, more peace of mind, or energy.  I point this out because it is the reality of being a special needs parent...and its damn depressing.

So, the next time you hear or read a special needs parent sounding scared, angry, sad, or ungrateful SAY NOTHING.  LISTEN.  The attempts to put the bright side spin on things or to cheer us up is a) dismissive of our process, b) at times absolutely insensitive, c) outside confirmation that we are totally screwed, if we weren't you wouldn't have to cheer us up would you?..in this case, uh, yeah, already got that.

If you are a parent of a special needs child, PLEASE, PLEASE allow yourself to grieve any damn time you need to.  It does not mean that you don't love your child.  It does not mean that you are not grateful that they are yours.  It does not mean that you regret having them or regret who they are.  It means that you are a healthy, functional person who sees all dimensions of life.  It means that you are allowing yourself to feel and be authentic instead of shutting down the feelings that are "ugly"...because I promise you, they will seep out in ways you never intended and poison the good.  If you cannot be honest with yourself, if you cannot be authentic in you pain, rage, and disappointment I challenge you to be absolutely authentic in your love, joy, and pride.  You can't do it.  You can feel approximations of all those things, but not the pure experience.  You can't have light without dark, its just the way it is.  I accept you, warts and all.  I will rage with you.  I will cry with you.  I will look into your eyes and nod at your heartbreak over your child never being a ballerina, a veterinarian even though she loves animals, a race car driver, a college student, a dad, a mom.  No judgements here.  If I am to accept my children just as they are, I must accept myself and you just as we are.    And I do, whole heartily....even when that heart is shattered to pieces.

So, on this Mother's Day I go to sleep with a gorgeous beaded bracelet on my wrist in rainbow colors from my Nixi.  I will wake up to a lovely melamine hand print plate hanging in the hallway from my Safi girl.  A new week will begin, starting our transition to summer and the end of school.  I predict that I will feel great joy, fleeting moments of intense anger, a good helping of sadness, and a lot of the daily grind in the week to come.  Nixi's Risperidone was increased, doubled, and she's been extremely emotional for the past two days.  She remains psychotic but we still see tangible gains from the meds and she had two of the best days at school that she's ever had this past week.  Reminding myself that we aren't shooting for no symptoms, just better quality of life and a lessening of symptoms.  I need to speak to the school about meeting with Safi's teacher for next year.  I need to meet the soon to be new principle of Safi's school for next year.  I need to figure out if it's reasonable for Nixi to stop napping next year, as Teacher Mel's 4 year old class will cut that out.  I have a lot of fine tuning in the week ahead.  It was a nice Mother's Day.  My girls' love me and they made that absolutely clear.  My tank is a little more full today because of it.

Sarah

We had a great week.  Nixi is responding really well to the Risperidone with minimal side effects.  She has some stomach upset after she takes it and some constipation but all things considered, we'll take that.  We have noticed that .25mg seems sufficient when we are at home. Its looking like we'll need to increase it to.50mg at the end of the week to carry her through the whole day and all of the outside stimulation that decreases some of the benefits we see when she's in the outside world.  We're good with that.  With increased dosage comes increased risk of side effects.  I'm planning to take it exceptionally slow by cutting a .25mg in half for a week or two then going to the whole .50mg.

Beside unwanted side effects, it seems that with really young children the way to go is slow and low.  If she develops one of the more serious side effects the medication has to be stopped and a new one started.  If we go too fast we may "burn out" the efficacy of the drug too quickly.  See, Risperidone is working for now but it wont always work.  The chances that she'll be able to stay on one drug for 10, 15 yrs is extremely low.  Since children are growing and their brain chemistry and body changing, dosage needs to be fiddled with frequently to continue to achieve the same effect.  These kids end up on the highest approved dose for adults by the time they are tweens...sometimes sooner.  Adolescence hits and there is no where to go so you start adding additional meds.  With all of the increases and med cocktails, side effects...the really scary ones, increases exponentially.  Nixi will likely require to be on medication for the rest of her life.  I say likely because there is the off shot that the medical community will find a more permanent method of stabilizing psychosis...I don't know how, but its certainly possible.  Barring the big medical breakthrough, medication will be with Nix forever.  The last thing we need is to go through all of the available drugs before she hits her 20's or 30's.

So, low and slow we go.  I'll call the psychiatrist for our pre arranged telephone appointment and give him our observations.  Her thoughts are much clearer.  We've been able to hold real conversations with her and play games with her for 20 min or more.  She continues to hallucinate...a "super squirrel" flying outside her car window to get a nut, when asked if she thinks the meds are helping replies "Yeah, but my head keep making a lot of different noises at night and I don't like that.", etc.  She role played with me the following day saying that my head had too many voices talking all at the same time and that she would keep me safe.  She's still quite moody and irritable but she is recovering MUCH quicker from these episodes.  What would usually throw her for an entire morning of tears and screaming is now over within minutes, if not seconds.  Her magical thinking seems untouched by the meds, still believing that her and I are psychically connected and that I can hear her from miles away or that her teachers know when we are in our leaving for school and that they talk about it.  Also, sadly, the delusion that I am not her birth mom is still here.  For a few days there it seemed to be gone but then I overheard her telling Safi that her mom brought her here to our house to live with us forever.

So what is Risperidone supposed to do?  It primarily targets hallucinations, delusions, and disorganized thinking.  We can see from just a week that it has helped tremendously with the disorganized thinking, some with the hallucinations (while still there, it seems easier for her to acknowledge them briefly than move on), but delusions are the hardest symptom to treat in psychosis so I wasn't expecting any miracles.  All in all, we're pretty happy with how its going.  Remember, our goal is for symptoms to be in the background...not totally gone and our daughter a walking a zombie.  Thus far, we're reaching that goal!

Mike, Nixi, and I were playing a game with a balloon.  We were tapping it back and forth to each other.  I was struck mid game by the genuine delight and joy that Nixi was experiencing.  I'm used to the wild, maniacal laughter that sounds so forced and unnatural.  This was different.  I have been able to count on my hands the number of times that I have heard Nixi genuinely full belly laugh...always prompted by her sister's shenanigans.  This night her focus on the balloon was intense, her absolute joy and surprise at its quirky movements and final destinations were absolutely real and lasted a solid 20 minutes.  It was amazing.  Mike and I didn't want to stop playing because we were so mesmerized by this very real child in front of us.  Nixi has always been a caricature, an exaggeration of a child.  This was the real Nixi and it was beautiful...absolutely beautiful.

Safi had a good week, despite missing school on Monday to get over being sick.  Her class had been incubating eggs and 4 hatched.  She got to hold them and I'm positive that she secretly named them all. We had a lot of water fountain park days after school.  On the one day when her bestie Sophia wasn't there and Logan, Zoey, and Josh were home taking care of Big Josh who had pneumonia, a couple of her other friends from school showed up.  They ran, squealing "Safi, Safi!!!" from their car, throwing their arms around her and grabbing her hand to go play in the water.  It was really, really special.  She has friends that like her because she is her, not because anyone has facilitated their friendship or guided their play.  She made friends on her own and that victory belongs solely to her.  Yes, adults may need to translate when issues arise...but when they do, her friends chose to remain her friends because they like her.  Its wonderful.  She's an amazing kid and she absolutely deserves for others to know that even if it may be a struggle sometimes for her to communicate how rad she is.

We are expecting a visit from the tooth fairy tonight.  Safi lost her second tooth and its all very exciting, you know.  Safi, Nix, and had a serious discussion about the tooth fairy tonight before bed.  Safi thinks she either lives near Santa or in outer space.  Nixi thinks she lives in a hole...I think she means in a tree.  We discussed that some fairies are small and some, like in Sophia the First or Cinderella, are big.  The consensus was that she is small, with a high pitched voice, and that she will not take dirty and/or rotten teeth.  We have yet to come to a consensus on how she procures the small gift she leaves behind.  Make or buy?!  We'll have to get back to you on that.

This week is National Children's Mental Health Awareness week, Mother's Day is coming (I hear Nixi wants to give me a rainbow), and the weather will cool down for a few days.  I anticipate a week of up's and down's, tears and laughter, and perhaps a rainbow at the end.  A true roller coaster ride from start to finish with a little bit of magic thrown in for good measure.  Sounds about right.

Sarah

Ahoy, Scooby fans...fun on a windy Sunday....